Michael is married and a father of three, one being a child with SMA Type II (born in June, 2011). He is an educator who has worked directly with children and their families since 1994. He loves his family, writing, working with his hands, and taking road trips. Michael holds a bachelor’s in psychology (1994) and a master’s in education (2001).
Ella, 10, the youngest of our three children, is thriving. She has friends from school, in the neighborhood, and online. She sings in a community choir, and occasionally plays with her siblings. Due to Ella’s disease, spinal muscular atrophy type 2, which directly affects her respiratory…
My daughter Ella was diagnosed with spinal muscular atrophy type 2 at 14 months old. Our doctor offered us the hope that although there wasn’t a treatment or cure at the time, there was equipment we could use and therapies we could engage her in to give…
Life has been a roller coaster since my youngest daughter, Ella, was diagnosed with spinal muscular atrophy type 2 at 14 months old. Shortly after her diagnosis, Ella received a power wheelchair from our insurance company. It was 400 pounds, raised and lowered to the ground,…
This time of year has always been a favorite of my three children. Ava (13), Henry (12), and Ella (10) enjoy the changing leaves and the warm fall days followed by chilly nights. They delight in leaf piles and in wearing sweatpants and sweaters to keep warm. They…
Our 10-year-old daughter Ella, the youngest of three children, was born with spinal muscular atrophy (SMA) type 2, and needs help with many tasks throughout the day. In the mornings, I get her bathed, dressed, and ready for the day. If she needs to…
Our 10-year-old daughter, Ella, who has SMA, loves to sing. She’ll ask her mother to print out song lyrics and then sit at the kitchen table and sing. Her voice is strong, and her pitch is perfect. She has quite a range as well. During…
Our local school district just announced that hybrid learning will start at the end of October. We can choose to participate or continue staying at home and engaging in e-learning. If we chose the hybrid learning model, our kids would go to school for…
A blue sky peered out from behind white, fluffy clouds. Rays of sunlight followed. The air was crisp and cool, and the trees had started to change colors, expressing the coming of fall. Our family had plans to meet my daughter Ella’s cousins at a…
Our daughter Ella is in fifth grade, learning remotely. Every day, she logs into her Zoom classroom and takes on the day’s lessons. She is dedicated to her education and enjoys her classmates, albeit online. When she has breaks during her studies, Ella plays…
My 10-year-old daughter with SMA, Ella, loves animals, so much so that she has a computer game simulating the adoption, trading, and buying of animals with others. She and her friends play that game every day. We have several animals in the house, including two…
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